How losing my husband to dementia inspired my research career
In 2008 at the age of 58 I made a big change in my life. My daughter and son had left home to go to university and I moved from Oxford to Manchester to pursue a new career as a dementia researcher.
I completed a PhD in 2015 and now specialise in using MRI (magnetic resonance imaging) to investigate brain changes in people with dementia with the aim of improving diagnosis. I’d previously worked as a computer programmer, but I decided I wanted to use my brain to help make breakthroughs possible in the search for life-changing treatments for people with dementia.
What brings me to the university every day is a determination to ensure other families don’t have to go through the years of anguish I went through with my husband Clive. He was diagnosed with frontotemporal dementia aged just 46 and died aged 51.
Hindsight is a wonderful thing. When I look back now I wonder why it took so long to realise that my husband was ill. The strange behaviour, the lapses in memory, the inability to fill out simple forms, were all things that changed so slowly that I acclimatised myself to them all.
It was only after a few years that I understood how truly disabled he was, and then I had to persuade the doctors he was unwell. For a long time, they refused to admit that a healthy man in his early 40s could have dementia. When we finally got a diagnosis, there was no treatment and very little support.
Clive was 40 when he first approached his GP with ‘problems with reading and writing’. He was reassured it was normal. With hindsight, one questions that decision. Reading and writing are such specific skills, and not normally lost in middle age. However, Clive accepted it, and got on with his life.
We had just had the first of our two children, so there was a lot of change. Three years later he was made redundant after a big row at work regarding changes in his behaviour and ability (‘refused to accept direction’, ‘inability to write reports’) and failed to find another job of any sort. He couldn’t even remember how to turn the computer on to write a letter. And still he refused to admit he was having difficulty, and I, busy with childcare and my own job, just accepted it.
Eventually, five years after he first talked to his GP, we got a diagnosis of ‘pre-senile dementia’ (a term not used now), later modified to behavioural variant frontotemporal dementia (bvFTD).
We managed to get by as a family for another year or so, but as his symptoms progressed he had to go into full-time care. He died in 1999.
After my experience with Clive, I found that he was not alone – there are several thousand people in the UK who develop young-onset dementia. The majority have difficulty getting a diagnosis, and a gap of several years between first noticeable symptoms and diagnosis is common.
Clive was diagnosed in the early 1990s, and nowadays things are little different. We still don’t have a test for frontotemporal dementia. We still don’t have a treatment that will stop or slow the progress of any of the various forms of dementia. Although maybe GPs are more aware that dementia occasionally hits people under 65.
So, why does getting a timely diagnosis matter? If cognitive difficulties are mistakenly put down to ‘a mid-life crisis’, or alcohol abuse, or any of the other excuses people come up with, there is no support, no sick pay, no benefits. People resign, get divorced, are made redundant or sacked. It would be very different if they had a heart attack, or a stroke, but those things are immediately recognisable.
We also know that changes in the brain start several years before dementia symptoms develop. For new treatments to be effective we need to be giving them to people before the destruction of brain cells caused by Alzheimer’s and other forms of dementia is noticeable.
I’ve only been a dementia researcher for nine years, but in that time the field has changed greatly.
We’ve seen significant breakthroughs in our understanding of dementia. Just as importantly there’s also a lot more public awareness. It is no longer an illness to be hidden, but something that more people are prepared to talk about. And that has to be a good thing. How can you study an illness if you refuse to admit it exists?
People are becoming much more aware that Alzheimer’s and the other forms of dementia are physical diseases and not an inevitable part of growing old.
The biggest and most promising change for me is that the sense of hopelessness that has existed around dementia for so long is fading. Go to a dementia conference nowadays and there is a real optimism among scientists that the first life-changing treatment for dementia is on the way.
So, join me in my mission to make breakthroughs happen – start that conversation, arm yourself with knowledge and get behind Alzheimer’s Research UK’s mission to bring about life-changing dementia treatments.
About the author
Dr Helen Beaumont’s personal experience of dementia led her to complete a PhD using MR scans to look for signs of FTD and her findings have shown that it is possible to detect it by examining the amount and location of fluid in the brain. She continues to works in research at the University of Manchester.
Extremely sad, thought provoking and inspirational blog. Well done to Helen for making those breakthroughs happen through research and inspiring change!
Helen, I saw you on TV this morning. I remember you and Clive from the late 1970’s early 1980’s at Bicester Hash House Harriers. You were both good runners so to hear of the loss of Clive at such a young age… I do have a couple of photos including you both. I am now a Parkinson’s sufferer but still follow the flour although not so quickly. I wish you every success in your research.
Helen, we were very interested to hear you talking about your husband Clive’s Dementia at such a young age. This is of particular interest to us because my husband was diagnosed with PCA in January 2015. Up till now we have managed to live a normal life but it has started to take its toll on me. In the beginning we kept it to ourselves but have more recently told a few friends who have proven to be a great help and support. We hope that through your research you will eventually make a breakthrough.
I’m 47, a rehab engineer and I think I’ve got dementia coming on, starting to get confused writing notes and other tasks. Extremely distressing. 🙁
Thanks for your work Helen and sorry about your loss.
No one in government cares about your ordeal, or else they would be spending more money and making more efforts to find a cure for dementia. The government couldn’t give a toss. There are not enough research dollars being spent on dementia. Many talented researchers don’t have money to keep their labs open. We are not making sufficient progress, and there is nothing in the future but a huge spike in demented patients, with no hope of a cure. Society has left those people “up shit creek without a paddle.” The family GP will pat them on the back and smile, but there is no treatment on the horizon unless society readjusts its priorities.
Helen I have just read your blog. In April my 59 year old husband was diagnosed with semantic fronto temporal dementia. With hindsight i can see that it has progressed over a number of years. I did not understand what was going on & acclimatised to the gradual change in his behaviour. Unfortunately we have been told there is currently no treatment for my husband’s type of dementia. I have found our local Alcheimers Society very helpful. I would be grateful to hear of anything you think might help him.
We’re sorry to hear about your husband’s diagnosis and appreciate this will be a time of adjustment for you and your family.
Semantic frontotemporal dementia affects a person’s language, often causing a loss of understanding of facts, and difficulty finding the right words or the meaning of words. It is a progressive condition, and as time goes on the person may find daily tasks more difficult and require more care.
Alzheimer’s society is a great charity that focus on the care of people with dementia, providing information and support. There is also fantastic support group for primary progressive aphasia run by Rare Dementia Support, you can view more about this here http://www.raredementiasupport.org/ppa/
While there are no treatments specifically for frontotemporal dementia, the symptoms can be managed with different non-drug treatments such as speech therapy or physiotherapy. It is best to go to your GP or a specialist to discuss different treatment options that may help manage symptoms.
If you would like to know more about the current treatment options for frontotemporal dementia, and other types of dementia, then the booklet ‘Treatments for dementia’ is linked here: